I was holding off posting here for a while despite knowing I was stage IV for nearly a month or so now, while my doctors did all the tests to finalise the diagnosis. But when a biopsy came back inconclusive yesterday I lost it and would love to turn to this forum for help.
Basically my story is: Stage II IDC ER+ and PR+ last year, no node involvement and no LVI. May this year I had a chest CT for an unrelated issue and it picked up a small nodule (I posted on the 'Worried!' forum then). My doctor was absolute insistent that it was nothing, that the radiologist looked and said it was a non-suspicious intrapulmonary node, but if I really wanted we could rescan in 6 months for reassurance. I said yes please. Six months comes around and they scan me and tell me: the nodule has grown, there is now another one, plus a cluster of enlarged lymph nodes. So yes, we do think you have recurrent breast cancer.
Queue panic on my part and the inevitable PET scan (everything 'markedly avid' with huge max SUV like 17) but luckily seemingly no other spread. My oncologist says that because it's in my lung and nowhere else, they do need to biopsy to check the (unlikely) possibility that it is a primary lung cancer. But she thinks most likely recurrent breast and starts to line up treatment to put me on abemaciclib and fulvestrant (on the basis that I relapsed while on letrozole).
The final part is the EBUS TBNA biopsy of the enlarged mediastinal nodes, to check that it is breast cancer and also the receptors. that was super unpleasant but I thought at least when it was done we would have confirmation and could start treatment. In fact I was booked in to have my first fulvestrant shots and get my abemaciclib tablets next Tuesday so we start before Christmas.
Yesterday my oncologist calls. the EBUS results have come back inconclusive. The can't say if it is breast of lung or colon or what - in fact it doesn't test positive for any specific cancer but it *is* cancer. WTF. The official wording I believe was 'Nonspecific tumour of unknown primary' on the pathology report. It did say that the cells were ER-, and it also tested negative for certain definitive markers of lung cancer.
So now we need to do another biopsy, likely of the tumour in my lung. But it's 6 days before Christmas in the middle of a pandemic so good luck. My oncologist says it will be discussed at the MDT on Wednesday and that behind the scenes she's trying to find other pathologists who she thinks have a better background in breast specific to look at it.
I hate being in limbo. We know I have cancer aggressively growing in my chest. I'm angry their stupid EBUS interpreters cannot work it out. From my, admittedly non-medical, perspective, the obvious suggestion is that my strongly ER cancer has lost its receptors (hence progressing on letrozole) and become TNBC, or at best Her2+ (though I was Her2- before). I don't understand why that does not seem to be being tested for and I also why my oncologist is not suggesting that as the most likely possibility. If I have mutated to TNBC, I am anxious to start aggressive treatment asap.
Not sure if I'm asking any questions, just looking to see if anyone has had a similar experience or has thoughts on what I could be facing
love to all
3/7/2019, IDC, Left, 4cm, Stage IIA, Grade 3, ER+/PR+, HER2-
3/22/2019 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel)
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